Cincinnati

We went home with an excellent prognosis and everything was going great. That was until Landon took the last dose of his antibiotics. After 4 days, his stool developed a foul odor. Next he become inconsolable, and cried constantly, and did not want to eat. He started throwing up, first plain vomit, and then bile. I was convinced the cycle was beginning again and we rushed him back up to St. Louis Children's Hospital which was 2 hours away. They started him back on antibiotics, and within a few days, everything was great again. We went home shortly after on a longer course of antibiotics.

Again, everything was going great. He even gained 2 full pounds in less than 2 weeks! Everything was picture perfect... until he took his last dose of antibiotics. Within 4 days, the cycle began again, in the same order. This time it was caught early enough for us to treat it at home and avoid the 2 hour drive each way to the hospital. Again, he improved right away. But it was mentioned that he might have to stay on the antibiotics until his next surgery....

...but wait a minute! At this point I was pretty educated on Hirschsprung's Disease. You are not supposed to get enterocolitis while you have a colostomy in place! It is supposed to be next to impossible! Something didn't sound quite right. Why was he sick constantly? And how would the next surgery (to close the colostomy and reconnect his bowels) change anything if he was already having issues during the time that he shouldn't be?

Time for a second opinion. I did my research, and found that the best and most experienced doctor on Hirschsprung's Disease is Dr. Levitt at Cincinnati Children's Hospital. Fortunately for us, that is only a 5 hour drive away, so I contacted Dr. Levitt. I summarized Landon's story, and within 2 hours he personally emailed me back. I was very impressed with his response, especially considering our very own surgeon that had done Landon's colostomy was impossible to contact. I had to speak with a receptionist who took a message for the nurse, and then the nurse looked at the message, tracked down his surgeon, and this process usually took a couple of days! Forget about speaking with his surgeon personally! And that is the surgeon that only operates on 2 cases of Hirschsprung's Disease a year. In the other corner, in Cincinnati, we have the famous Dr. Levitt- who does several of these surgeries a week- in which Landon is not even a patient of- and he emails me back within 2 hours!

He agreed that something didn't sound right and had us come on up and admitted us to the Cincinnati Colorectal Center. Even with the 5 hour drive, it was amazing to be in a place devoted entirely to children like Landon. All of the nurses and nurse's aides were all experts on Hirshsprung's Disease. They ran several tests and determined that nothing was wrong with Landon's colostomy that posed an immediate threat, but something was definitely off and he shouldn't be getting enterocolitis over and over. They also didn't think he should be on such a high dose of antibiotics, and felt that he should wean off of them rather than repeatedly attempting to quit cold turkey.

So, as you can probably imagine, we decided that from now on we will drive the extra 3 hours each way to take Landon to Cincinnati. We have higher out-of-pocket expenses since they are out of network with our insurance, but it only amounts to a few thousand which is NOTHING compared to our child's life. They still suspect that something is wrong with his colostomy, but they recommend following a strict protocol of irrigations and some antibiotics and then just going ahead and doing the pull-thru sooner rather than later, rather than revising the colostomy and then having to put Landon through an additional surgery to do the pull-thru. So for now that is the plan!